Angelikah Demonikah Goes From Homeless Youth to Unlikely HIV Activist

Have you had guys who didn't want to date you because you were living with HIV?

I've had one person who was weird about it, and that was back when I was a drugged out mess. It would have been the worst mistake one-night stand of my life. I'm so, so blessed they were ignorant because, oh, my God, what was I thinking? Their ignorance actually saved me the embarrassment, in that situation.

So, yeah. But that was the only time. I don't know if it's because I'm a good judge of character or it's how I approach the topic ... And I think that has a lot to do with it, too. Because I think if you're afraid of your own status and if you put off an energy of expecting rejection, that's most likely what you're going to find. But if you're confident about it and you're informed, and you have information to give people if they have questions, and you don't view yourself as a diseased pariah -- you know what I mean -- and if you can put it out there like that, I feel like people are going to receive it a lot differently.

So you talked about that you were in a documentary. Can you tell me a little bit about what that documentary was, and where it was? And like what station, or what network?

I did a documentary for MTV a couple of years ago. It was called Me, Myself and HIV. They filmed me, and then they filmed also this man, Slim. He was from Africa, and I'm from the U.S. And so they filmed both of our lives. It was like an hour long.

It was just ultimately about us functioning with the relationships in our lives, living with HIV. It was an interesting experience. I'm glad I did it. My life is a lot different than it was then. So it's weird like.

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How was it different back then than it is now?

I was only like a year into my recovery. I had just started college for the first time. I was dating the first guy I dated since I found out. I don't know. It was just a lot of things. I feel like I was at a place in my life where I was finally gaining stability and confidence, and even though I was as old as I was -- I was 24 at the time -- I feel like I was just entering adulthood.

Things have changed a lot since then. My life has changed a lot, and matured a lot, and I've grown a lot. I realize my potential a lot more than I did at that point in my life. And so, for me, it's like a milestone, in a way. But it doesn't define me, in any way, if that makes sense.

MTV, that's a pretty big deal. How did it come about that they found you? Or did you find them? What was that process like?

So this woman from the production company, Firecracker Productions, who lives in the U.K., she contacted me via Facebook because I've always just been kind of activist-y on there in the HIV community. She asked me if I would send them like a couple-minute video that she could show to the rest of the producers and the people at MTV. And, I don't know, they wanted me to do it. I think it was within seven days; they had flown out here from the U.K. and started filming. So it was like all really fast.

What was the response when it came on television?

Really good. I've had so many people from all over the world contact me. I guess the biggest impact it's had on my life, like in a meaningful way, is when I've had people reach out to me and tell me they just found out they were positive, and they haven't told anybody, and they don't know what to do, and things like that. People I don't know from halfway across the world are reaching out to me and telling me these things. You know? And I always make an effort to reach out back.

Because I feel like, if you're going to do something like that, you're not doing it to get your face on MTV; you're not doing it for the wrong reasons. I feel like that's something you should do for the right reasons. And those reasons are to give these people somebody they can trust, and can talk to, and can ask questions to. And so, I mean, that's the biggest thing.

I've had, I don't know, probably hundreds of positive reactions from people I haven't even met. I've only had one negative reaction when it first came out, and I just ignored that one because, actually, I don't know you, and I don't care.

A hater is going to hate, right?

I've been writing about HIV and interviewing people living with HIV for about six years, and it's very difficult to get younger positive people to disclose, or to speak publicly about the disease. A majority of the interviews that we have on our site are with people that are over 30. Why are you the rarity? What is it about you that you were willing to speak out at an early age?

I've always been that type of person. No matter what it's been about, I've always been the person who has been like I'm going to be who I am, regardless of what anybody says or thinks about it. And I've always been the kind of person who, I would rather have five true friends in my life than a hundred people that pretend they like me. I think, for a lot of people, it's harder to put something out there that you're afraid that people are going to judge you for, and attack you for.

But, ultimately, I guess it's in my nature to. I mean, I'm going to school for social work; it's in my nature to do things for the better. When I go to sleep every night, I ask myself if I'm leaving the world a better place than I found it, and if I'm alleviating suffering more than I'm creating suffering.

And so, for me, I guess, the biggest part of it is just knowing that the more people stand up and are open about their status, the less stigma there is, and the easier it is for the next person to stand up and be open about their status and things like that.

And I feel like young women especially aren't a demographic that's really represented as much. We're not thought of as the ones that can be HIV positive. So it's like there's even a little bit more shame around it ... because it's not supposed to happen to us.

And so, I want to be that person that people can look at and go, "OK. I don't have to feel like I'm all alone in the world," if that makes sense.

In an interview that I did with Jack Mackenroth a couple of years ago, he said, "When I tested positive, I just didn't think I could achieve any of my dreams. ... I was so wrong." In other words, being diagnosed with HIV doesn't mean that you can't do the things that you want to do.

You said you're going to school for social work. At any point when you were diagnosed did you think that this would never be a reality for you, to go to school?

No. It's something I've always wanted to do. It actually made it more of a possibility. Because the thing is, even though I always wanted to get into social work, I was never sure exactly what I wanted to do with that. Having to experience HIV firsthand like this, it really, really made me realize that that's the population I want to work with, and that's what I want to do.

You said that you're an activist in your community. Can you talk to me about what that activism looks like? Is it through a certain organization? And what demographic does it serve?

It really depends. Right now I'm doing a lot of things. But one event that I have coming up is, I'm doing Dining Out For Life.

Right now I'm kind of really, really involved in school and things like that. But I just got my internship set up for next semester, which I'll be doing at the Aliveness Project, which is a Minneapolis-based community center for people living with HIV that provides different resources. I'm going to be interning under the prevention and outreach director there, and so I'm really excited about that.

That's great. Let's switch gears and talk about the medication that you're on. How is your regimen working?

It's a lot easier for me now to remember. It's become more of a routine. Now it's second nature to swallow a pill before I go to bed. And it's actually helped me in a few ways, because I'm not supposed to eat within a certain amount of time from taking it. It helped me stop late-night snacking, which has been good for me in other ways.

And it's helped me develop more of a routine -- like going to bed at the same time, and not eating past a certain time. It's been good for me.

In the beginning, was it a little harder to adhere to your medication? Are there any tricks or tips that you use to help you adhere?

Well, in the beginning, I never missed any doses. I've always been really good about that. I still don't think I've ever missed a dose. But in the beginning I was going to bed at random hours of the night. And so the window I was taking it in was like a five-hour window, instead of a two-hour window. And so I mean it was a little more chaotic. I would remember to take it, but my schedule was crazy, crazy back then.

So it's actually helped you regulate your own schedule.

Yeah. It's helped being in a routine and having a better sleeping schedule.

Do you have any side effects from your medication? Like vomiting or bad dreams?

No. I used to have the really, really vivid dreams when I first started it, but I don't have those anymore.

And so, altogether, how is your health? Your numbers are good? You're good?

Yeah. I've been undetectable since just a couple months after I started my meds. That's been forever, now. And then my CD4 is slowly climbing, so that's getting better. But, yeah, I haven't been sick in a long time. I feel really well. I've been exercising every day. I eat better than I ever have in my life. I take care of myself better because I feel like actually I have to now, and so it's gotten me to do that. I feel better than I ever have.

What's the relationship like with your doctor? And how important is it for you to have the relationship that you have with your doctor?

My relationship with my doctor is amazing. My doctor is such an incredible guy. He's just hilarious, and charming. He's been doing this forever -- since the '80s. So he knows what he's doing. But he's also really personable. Like, after I did the documentary, he had a wrap party at his house for me. He invited me, my boyfriend at the time, and the crew for the documentary to his home. And him and his girlfriend made us all dinner. It was really nice. So we have, probably, a more personal relationship than a lot of people do with their doctors. But it's definitely still appropriate.

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